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Friday, 14 October 2011

Much as I loathe the reason for being there, I’d
forgotten how much I relished certain aspects of being at the hospital. There’s
plenty I hate about it, mind – the smell, the waiting, the (ugh) other people –
but that tragically inclusive feeling of being in a place where folk know
your name is something I fear I’ll never stop appreciating.

As you may have read the last time I was having
treatment, I was embarrassingly goofy about making myself known to all the
staff I’d encounter on my trips to the hospital: asking after the chemo nurses’
kids, baking trays of cupcakes for doctors, winking at the terrified boy on
reception in radiotherapy... This time around, however, there’s a whole new level
of goofiness to be enjoyed – for now, with the revelation of my new diagnosis,
I’ve somehow been upgraded to a whole new level of access.

It’s rather like having your bog-standard Mr &
Mrs Smith membership swapped for an elite, special-members-only gold card,
except instead of concierge services and personal shoppers, you get access to restricted
new contacts, hitherto unrevealed telephone numbers and the names of
specialists unavailable to your average cancer-pleb. Worried that your new
anti-sickness meds aren’t working? No problem, madam, just contact this secret
specialist pharmacist and she’ll sort it out for you. Can’t get in for an
appointment when you really need one? Don’t fret, madam, here’s the number of a
dedicated registrar who’ll ensure you get in. Want to surpass the usual
check-over by a junior consultant? Very good, madam, the big cheese will be in
to see you shortly. Seriously, I’ve never been given more business cards in my
life. Decades of networking couldn’t get you to this stuff. I swear even the
way The Curly Professor greeted us was different this time; the secret
handshake of the uber-exclusive secondary cancer club.

And so, shameless hussy of an illness-tart that I
am, I’m bloody well going to exploit it. I mean, hell, I’ve paid my taxes, I’ve
been a good citizen, and I’ve sure as shit got a few extra quid in the karma
account. Hence, I’ve been embracing the shiny new services like Imogen Thomas
embraces a chance to get on telly, and being every bit as brazen with it. This
isn’t just The Bullshit, it’s The Bullshit iOS 5 – which I chose to match by
turning up to this week’s clinic not with a notebook of questions to ask, but
an iPad onto which I could simultaneously type the answers as The Curly
Professor spoke. (Never mind cancer-bitch; I suspect cancer-wanker may be more
appropriate.)

As this week’s long day at the hospital progressed,
however, I began to feel a bit guilty about my upgrade, even to the point of
feeling bad about my early-thirties, skinny-jeaned, shoulder-length-haired
presence in the chemo room – which, I’ve got to say, is a world away from the
place in which I was treated in 2008: gone are the peeling yellow walls and
uncomfortable, edge-of-the-room chairs facing in; now it’s all recliners and
personal TV screens and five-star style. Even three years down the line, I’m still
the youngest patient in the room – but this time, thankfully, I’m not there for
chemo (that’s something that comes home with me and is taken in tablet form,
with the second cycle starting this evening), but instead for my bone
treatment. Which is a rather daft thing to feel self-conscious about but, as my
fellow patients in the room begin to look iller and balder and paler as their chemo
does its thing, I will – or at least I hope I will – look much the same with
every three-weekly visit, like some kind of cheating chemo pretender.

The truth, of course, is that I’m probably in an unfortunate minority. The chances are that most women in that room are being treated for a
primary cancer that’s perfectly manageable, and so feeling daft about having a
decidedly less hardcore treatment for a decidedly more hardcore cancer is about
as dumb as it gets. It’s not like you can advertise that stuff, though. I mean,
it’s just not the done thing to loudly wax lyrical about your diagnosis in such
a scenario, and I haven’t yet been given a special membership badge that’ll
explain away my presence. Plus, I can’t really meet every ‘what the hell are
you doing here’ look with my secondary sob-story – it’s not fair on anyone
concerned and, besides, it’d make me and my iPad look decidedly less flash. However
I ought to feel, though, the guilt
remains – and not just in the chemo room.

Since we discovered what we discovered just over
three weeks ago, it’s been a dizzying old time – not just in terms of getting
our heads around the reality of my diagnosis, or dealing with the treatment, or
managing the change in our day-to-day-lives, but also in terms of accepting the
help that is suddenly available. Because the upgraded attention at the hospital
is one thing, but quite another is that which is available in the community –
largely through the quite marvellous Trinity Hospice. I first baulked at the
sheer mention of it, of course, taking my referral to a palliative care team as
a sure sign that my numbered days were of rather a smaller count than I’d like,
but in fact I’ve discovered that it’s quite the opposite. Trinity are, simply, there to help not just those at the end of their lives, but those
dealing with the kind of shit that’s landed in my lap; the kind of shit that,
yes, has a conclusion nobody can escape but, more importantly, has a
meantime that can be managed, be it with additional nursing and counselling,
physio and complementary therapies, or occupational therapy and administrative
assistance… all of which I’m entitled to, and all of which I’ve been feeling awkward
about. Add to that the charities wanting to offer me grants, the organisations
wanting to arrange special days out and the friends trying to organise once-in-a-lifetime
treats, and I’ve got more guilt than a Catholic condom salesman.

‘But surely there are people worse off than me
who’d benefit more from all this help?’ I said to two of the Trinity girls who
visited me at home yesterday.

‘There might well be,’ said one, ‘but they’re
getting it too. It’s not like you’re having something that could be going to
someone else – this is available to everyone in your position.’

‘But, y’know, I’m okay, aren’t I? I mean, aside
from the cancer stuff. There must be people in worse positions?’

‘And there are plenty of people in better ones,’ she
said, as I squirmed in my armchair. ‘Seriously, Lisa, you don’t need to feel
bad about accepting help. It’s there to make your life easier.’

‘Hm, I s’pose,’ I said, wholly unconvincingly.

Perhaps, then, the problem is that I’ve been
viewing all this new treatment and assistance as some kind of upgrade; some kind
of sneakily acquired benefit for which I haven’t sufficiently paid. Because the
more likely reality, I suppose, is that it’s not an upgrade at all, and simply a
double-headed fact that a) my new diagnosis opens me up to a different kind of
approach, and b) three years on, facilities and
treatments have improved. (And if it is indeed the latter, it
makes me even more chuffed to have signed up a team for the Marsden March next
spring – for which you can sponsor us by clicking here, or by hitting the button at the
bottom of this post.) Because, in the time that I’ve been busily recovering and
returning to some kind of normal, the medical (and charitable) worlds have been
busily advancing, making the 2G of three years ago look rather laughable in
comparison to the 4S of today.

Which, as The Curly Professor said himself, only
bodes well for my precariously indeterminate future. ‘Look, Lisa,’ he said,
pulling my attention away from my iPad and back to him. ‘We can’t yet tell
what’s around the corner. Because, even in the time since we last treated you,
we’re already doing things differently. And as for what else will be available
to you in another five years… Well, who’s to say?’ All of which I’m roughly
translating as: ‘We can’t guarantee
your upgrade on this flight, madam, but if you ask for Jeeves at the special concierge
desk, we’ll see what we can do.’

17 comments:

You should be proud to be in the chemo room, a shining example of how to deal with cancer for all those stuggling with the chemo side effects. So hold you head high and take whatever is offered to you. xps. I have donated but must be some kind of retard it took me about 3 goes so I hope it's worked. I can't facebook or tweet the link because the sites are blocked at work, so maybe you could tweet your sponsor link later and then I can RT x

Well I got through about four bits in there that I want to copy, paste and go on about how they made me go all doe-eyed and tingly, but by the time I got to "I’ve got more guilt than a Catholic condom salesman." I'd given up choosing which bit to gurgle over most.

Even though we only had hospice for the "end of life" stuff you mentioned, it was a total Godsend when Dad had cancer. We would have been so lost without them--I'm so glad you have such a great team caring for you! You are in my thoughts all the time.

Lisa, learning to cope with s**t is one thing, but from my (unfortunately wide) experience hospices are the number one when it comes to balancing meds for the finest levels to enable as normal a life as possible, for a huge amount of time as possible! I don't know how they manage it but they are simply amazing! so, trust them.....and yes, you are so right, I'm looking at daughter's treatment and it's so far different to that she'd had before as to be almost unrecognisable! Love to you with a big hug too, Helen x

Know what you mean about the special treatment. I still get embarrassed walking past the odd baffled stare into an apparently empty ward where the clinical research nurses hide away. Lovely to get a nice cup of tea, free sarnie and undivided attention (most of the time)...perks to balance the crap reality of why you are there...

Head up, bigwig consultant is right, new things are coming out all the time which is why I don't ask for prognoses. Hope is a good thing.

It is a very hard thing to come to terms that there is a very real end to your life. Often we think of death in the abstract and your secondary status changes the abstract to the concrete.

I am sorry for that. I am not sorry for the joy with which you have embraced every part of your life. You are, I am certain, an inspiration to many.

I would urge you to embrace hospice care with the same fervor. Hospice is focused on living well while you are dying and this includes physical, emotional, and spiritual care for you as well as your family and friends.

I appreciate you so much. I wish you love, right to the end, whenever that may be. In the meantime, live well.

I too feel like some kind of cheating chemo pretender when I go in there among the pale, ill, bald patients in my tennis skirt or any other outfit that conveys that I'm doing things other than sitting in a vinyl recliner watching the bags drip all day. Sometimes they watch as I get my port flushed and go on about my day, and I imagine they wonder if my bad-hair day is really a cheap wig! Love this post, and agree that the lady from Trinity needs to be knighted. Or at least get some cupcakes!

Having both worked in palliative care & utilised it when my Mum was terminal I'm here to sing its praises. Utilise it as much as you can, of course you deserve it you ninny! Stop with that guilt lady, or I'll have to come over and wag my finger at you!

Thanks for this incredible post. It must feel so ironic to sit there in chemo appearing to be getting a less harsh looking treatment for what is actually a more harsh round two with the cancer beast. It must be difficult to not speak up about what you're really facing. Glad your Trinity Team is so awesome. None of us knows what's around the corner and I often wonder if I'd want to know if I could...

I know I should comment on the cancer, but you know the first thing I think when I read any of your posts (whatever the topic is), is God I wish I could write like this woman.

I know it is a ridiculous thought, finding something to be jealous of (actually two things, I am jealous of the iPad too!) with everything you are going through is just plain nutty.

And the only reason I am telling you, is to remind you that you are so many other things than the 'Cancer Bitch'. To me, whatever else is going on, however hideous it all is, you will be the best writer I know. If of course, it is okay to say I know you!

Like everyone said (including your very own self re: the ol' karmic bank account), you more than sufficiently deserve these services, so lie back and enjoy 'em already, chiquita!

I would not have made it through the last month of my mom's life had it not been for the folks from hospice; they do so much not just for the patients but the loved ones as well. As I might have already told you, the day before Mom died, one of the nurses came over with twin newborn goats she was taking care of, so for about half an hour, I got to feed and hold them (which left me convinced that baby goats make everything better)--it was a wonderful respite to be holding new life in my arms while letting go of the single most important person in my life...so PLEASE let them help you, and P, and your family. You are most definitely entitled to what they provide, so please take those feelings of guilt and save them for things like having an iPad, hmmm? ;) *resentful glare*

Though speaking of Important Persons...my fella and I have been talking a lot about traveling, and I've informed him that my first and most vital destination is quite simple: London and you, ASAP. Him being him, he agreed 150%. :)

One other brass-tacks item: in the past year I've reluctantly had to make my peace with the fact that I'll probably be taking tramadol for the rest of my life because of how much elevates my ability to function, and though it's not a narcotic, it still has plenty of those opiate side effects like dehydration and constipation, so in terms of you dealing with the morphine side effects...apart from drinking scads of water (which Cymbalta makes me do anyway), I've resigned myself to taking stool softener tablets, since actual laxatives give me cramps. Worst comes to worst, there are also suppositories; the main thing is that you keep your colon healthy and functioning properly!

Cos otherwise...jeez, you really don't want more comments about poo in this detail from me, do you? Mr. Ward might, but I suspect you don't. ;) ♥

Eh up

Welcome to the website of me, Lisa Lynch: author, editor, blogger, wife, Ram, telly-addict, doofus, cancer bitch (but not, I hasten to add, cancer's bitch). The latter of those things is what initially got me blogging, swearing my way through The Bullshit following a pesky breast-cancer diagnosis at 28. Some three years down the line – with newly grown hair, a newly published book and a newly perky rack – I dared to assume that I'd seen the worst… only for the c-word to crop up once more: this time in my bones and brain, and this time incurable.

And so, from being a blog intended to chart my evolution from 'the girl who has cancer' to merely 'the girl', it seems we're back to the former. (If, indeed, it's still acceptable to even call yourself a girl in your thirties. Which, let's be honest, it probably isn't.) But before you write this off as Just Another Moany Health Blog, stick with me. Because cancer or no cancer, curable or incurable… I'll still tell it the way I see it. The universe might be in control of what’s going on in my body, but I'm in control of what’s going on in my blog. Which is why I hope you'll continue to join me as I write my way through my experiences. You see, this isn't a story about some poor, unlucky lass being taken down by cancer; it's simply a story about the extraordinary life of an ordinary girl woman.

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